The Dos and Don’ts of Exercising with Ehlers-Danlos Syndrome

Exercising with Ehlers-Danlos syndrome (EDS) is complicated. On one hand, you have to do it: exercise is the best treatment people with EDS have for an otherwise untreatable condition. On the other hand, people with EDS have to be very careful about which exercises they participate in to avoid injury, and often experience pain during the workout.

EDS is an underdiagnosed genetic condition that affects connective tissue production. This can manifest in a variety of different ways, from the classic symptoms of stretchy skin and hypermobile joints, to the concealed and often mysterious effects, like heart problems, low blood pressure, and fainting. To read more about EDS, click here.

EDS affects every patient differently, so each person has to figure out what works for them, typically with the help of a physical therapist.

If you have EDS, and particularly if you have joint hypermobility, here are some guidelines to keep in mind. These guidelines are not a replacement for working with your specialist on an exercise plan, but can be used as general knowledge on being safe with EDS and exercise.

DO:

Exercise regularly: If you have EDS, your connective tissue in your tendons and ligaments may be compromised. Luckily, strong muscles can help pick up some of the slack, stabilize and secure your joints in place, and cut down your chronic pain. Everyone knows that exercise is good for you, but if you have EDS, think of it as daily medicine.

Get in the water: Even people without hypermobility rave about swimming as an alternative to running, since it gives a full body work out without stressing out your joints. If your joints are already a little wiggly, the pool is an excellent place to work out. With that said, certain strokes should be treated with more caution– for example, Butterfly can be harder on your shoulders. If swimming doesn’t feel like the right option for you, check out water resistance exercises and aquatic therapy. Strength training in the water helps build your muscles without the same gravity complications you might experience on land.

Elliptical running: Ellipticals are another great way to get the benefits of cardio without damaging your joints. Incline treadmills, stair-steppers, and stationary bikes are also solid ways to get low-impact exercise.

Free weights: Stabilizers are the deep muscles people often forget about, like the tiny muscles along your spine– but if you have hypermobile joints, their importance can’t be overstated. These muscles are less involved with obvious movement, and more involved with keeping your joints stable. Working out with free weights strengthens stabilizer muscles in a way that machines, which often only have your muscles move on one axis, don’t. The downside of free weights is that their lack of rules gives you more room to make mistakes, so it’s best to start light and to work with someone who understands your condition to do this safely. To read more about strengthening stabilizer muscles, click here.

DON’T:

Stop because of mild to moderate pain (kind of): This is a tricky one, because I don’t mean that you should stop listening to your body if something feels really wrong. However, working out with EDS may hurt, but patients are encouraged to push through some pain. It might be difficult, but ultimately, strengthening your muscles will reduce chronic pain in the long run. Listen to your body and respect your limits– you may want to work with a physical therapist to better differentiate good and bad pain– but understand that pain is probably going to be part of the process. At the Ehlers-Danlos Society Global Learning Conference this year, Dr. Jan Dommerholt discussed the benefits of an external focus on exercise, which may help with challenges pain poses.

Contact sports: Football, hockey, rugby, aggressive trampolining– avoid anything that involves tackling, severe injuries, and your mother’s disapproval. If you regularly hear about athletes leaving a sport due to injuries, it’s best to keep your distance. You’re especially vulnerable to these risks, and may have a more difficult time healing.

Distance running: This is one of the less joint-friendly cardio options. People will tell you how much they love running outdoors, and it will sound really wholesome and nature-y, but always remind yourself that you get to watch TV on the elliptical. Check out more of the rare benefits of EDS here.

Olympic lifts and cross-fit: The bright side of having a rare connective tissue disorder is that you are now exempt from these high intensity workouts. If you’re really enthusiastic about them, you could potentially carefully work your way up to these workouts, but if not, you’re good.

Competitive gymnastics or cheerleading: If you can’t tell whether your flexibility is coming from stretching your muscles or stretching your already stretchy tendons and ligaments, you might want to avoid the activity. There are ways to work around this, but competitive sports can incentivize harmful practices.

Disregard safety practices because you don’t quite meet EDS diagnostic criteria: To be clear, we aren’t trying to advise the general public to go on a self-diagnostic spree. With that said, EDS diagnostic criteria is weird and imperfect and changes as researchers learn more about it. It typically takes years for someone searching for answers to receive an official diagnosis, and others go their whole life without finding one. There’s also a misconception that people who fit into the criteria of hypermobility spectrum disorder (HSD) instead of EDS have a less severe condition, which isn’t true– both disorders cause widely varying symptoms. If you’re still working to secure an official diagnosis, don’t dismiss the symptoms that you have. Play it safe– your doctor might have you in EDS limbo, but that doesn’t necessarily mean your connective tissue works. If it turns out your don’t have EDS or HSD, then I guess you’ve just done some joint-friendly exercises and made an active effort to avoid concussions and injuries. You can do your own calculations, but in my opinion, that’s not as bad as finding out you do have EDS, and have to deal with additional pain from harsh work outs.

PROCEED WITH CAUTION:

Yoga: EDS and yoga have a complicated relationship, and there are many articles devoted specifically to the subject. If you have joint hypermobility, you’re probably going to think you’re awesome at yoga. As tempting as it is to impress your class with all the unconventional ways your body can move, you don’t actually want the joint subluxations that come with this. Yoga is still totally possible with EDS, and can be deeply beneficial. In fact, many patients consider it a transformative experience, but don’t just jump in. Research the best yoga practices, and find a yoga teacher that can help you improve your balance safely. To read more about EDS and yoga, click here.

Non-contact team sports: The jury is still out on soccer, tennis, volleyball, and the like. The effect of this type of sport varies from one person to the next, depending on how EDS affects your body. The best advice I can give you here (which more or less applies to everything on this list) is this: don’t make your decision based on the opinion of one rare disease writer on the internet– talk to your doctor, your physical therapist or specialist if you have one. Reflect back on your own life, your injuries and recovery. EDS manifests differently in every patient, and your experience might be totally different than someone else’s.

To read more about working out with EDS, click here and here to view a powerpoint and video presented at an annual Ehlers-Danlos National Foundation conference, or here to read an article by a fitness trainer on the subject. You can find another fantastic resource here.

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